A lot of people lately have wondered what's up with me. I'm MIA, I'm distant, I'm short, I'm exhausted.. I'm essentially all of the things that I shouldn't be, I guess.
I'm not one to share all of the details, more so because shockingly talking about myself makes me really fricken uncomfortable. I know for some that's hard to believe, but it's the truth. So join me as I take you on a tale as old as time (see what I did there :)) to explain what's going on with me..
The summer between my junior and senior year of high school I started experiencing weird arm pains. My arm would go numb for days at a time. No one could figure out why. I saw doctors, chiropractors and nothing really seemed to fix the issue.
When I got into college, the pain and numbness became so bad that our coach drove me off the golf course one day straight to the baseball team’s trainer to get me checked out. The trainer referred me to a doctor who recommended I have surgery to fix the issue I was having. Feeling relieved that we found a solution and knowing that I'd be able to continue to play golf I had surgery. Unfortunately, the surgery was unsuccessful.
The following summer the pain became too great again. I found a new doctor who had been a former Olympic team doctor and was an expert in shoulders. He ran multiple tests and gave me two options. One, he could scope me, although, he wasn’t sure it would fix anything or two, he could cut me wide open on my shoulder blade where he suspected my issue was. If I went with option two there was no guarantee I’d ever golf again. So obviously, I went with option one.
The following summer I was right back in the same boat and the pain was unbearable so I called the doctor and told him to open me up. When he cut me open he found that my shoulder blade had a growth on it, like a hook. Every time that I lifted my arm (or hit a golf ball) the hook would hook on to my top rib and pull my ribs up. Thankfully, he had done a shoulder and scapula rotation at Mayo Clinic during his residency and had seen a similar surgery done. As the surgery was incredibly complex and it required him detaching all of my muscles and ligaments, shaving down the bone and reattaching them again.
Recovery was incredibly hard. I wasn’t able to move my arm for 4 weeks. I had friends driving my to class, helping me shower and get dressed. It really took a village to get me through the first month of my senior year of college. With that said, once I recovered I felt great.
The year after we got married the pain came back. This time not only was my arm going numb, but the pain was in my chest, up and down my neck and back. I called my doctor but he wasn’t sure what else he could do for me beyond what he had already done.
I saw several doctors here and none of them could make any sense of what was going on. The location of my “hook” is very hard to see on any imaging. Every CT scan, MRI, and X-ray I had came back clean. The only suggestion we were continuing to get was pain management. At 24 years old I didn’t want to go down that path.
So we decided to go “to the next level” and I applied to be a patient at Mayo Clinic. They had me send over all of my records and fill out an extensive amount of paperwork. They said the doctors would review my file and if they wanted to take me on they’d call. The gal on the phone told me IF you get selected plan on hearing back in 3-6 months.
The next week they called back and asked me to come for an appointment. That appointment turned into 3 days of the most intense medical testing I’ve ever experienced. I had MRIs, CT scans, X-rays of my shoulder, neck, chest and brain. They did an EKG. I had a full neurological evaluation. Every single thing came back normal.
The doctor was baffled but referred me to his colleague who he felt confident could help me. A month later we came back and met with the new doctor. He said no test would show them what was wrong, he said we could do physical therapy and it would either get worse or better. If it got worse I would need another surgery.
I did physical therapy and it instantly got worst. So we called and we scheduled surgery. The whole process was intense, but in true Mayo Clinic fashion it was so well done. Mike and I will always rave about the care I received there.
Recovery was intense. 6 weeks no movement. Mike did everything for me. Helped me shower, brush my teeth, pull up my pants, like legit you can do nothing one handed.
A couple of months after surgery I got pregnant with Oliver and everything was great. I was able to hold him and carry him all around, all things I worried I might not be able to ever do.
For the most part things continued to go well for the next 7 years. I'd have days where I was sore or tight, but nothing that I couldn't manage.
Last spring, shortly after Otis was born I noticed symptoms returning. I reached out to Mayo to see if I could connect with my doctor. Unfortunately, he had resigned a few days before I called and was no longer booking anymore appointments. I asked if someone else could see me, but due to covid my “problem” didn’t qualify for a visit as they were only seeing certain patients.
For a while the pain was manageable. Maybe I’d drink an extra glass of wine when it hurt a little more to make sleeping a little easier, but I was able to manage without Mike even noticing. I say that not make Mike look like a shit husband, because he's not, I'm just really good at hiding my pain.
Anyway, progressively the pain has been getting a lot worse. The pain comes and goes in intensity and location. Sometimes it’s the shoulder blade, sometimes it’s near my rib and sometimes it just the tingling in my arm. Yesterday, the pain was so bad I puked. Two weeks ago I had a complete and utter breakdown in my car to Mike sitting outside of his work because I was in so much pain. Poor guy was a little taken back. We agreed it was time for me to seek help again.
The good news is my doctor has fully transitioned to his new hospital in Boston and is seeing “new patients”. After two weeks of trying to get it I finally got an appointment to be seen. Bad news, I have to fly to Boston to meet with him. The good news is most of the testing and imaging can be done here and follow up visits can be and will likely be done virtually. Obviously, surgery would have to be done in Boston, which based on my brief conversation sounds like it could be a likely outcome. I go see him next month and I'll be honest, I'm equal parts excited and anxious. I know I can't go on in this pain, but surgery would be very hard on me and my family and that's tough to imagine as well.
Its funny, last night I was typing up a short email about Oscar and our collective experience with Children's Hospital for a fundraiser we're participating in. For so long we've talked with him about his journey with EoE. For so long he has felt like he's the only one on a really tough journey. It wasn't until last night that it clicked that this shoulder thing is my journey. Similar to Oscar my problems aren't "normal" problems and the solutions aren't "normal" solutions.
This problem has now been impacting my life for more than half of it. That's so crazy to say. It's caused me to change course in what I thought was going to be my life story, multiple times. It's forced me, my parents, my husband and now my kids to all make sacrifices to accommodate what is going on.
In the moment it's really fricken hard. Not being able to hold your baby when they're crying because you physically can't do it, sucks. Not sleeping at night because you can't get comfortable only to be a wreck of a human the next day is not ideal (thank God for Starbucks). But then I look at so many others that have it so much worse and I'm thankful that my baby is home with me and lack of sleep is from pain when sleeping in my own bed and not in a hospital room while caring for my sick husband. So then I feel silly even mentioning it because so many of you are going through SO MUCH worse. So I keep it to myself.
Any now I have a bunch of people going WTF I had no idea it was this bad (including my husband). So I guess what I'm here to tell you, that if you're suffering you don't need to do it alone. No matter what your problem is, if it's a problem for you - its a problem your friends and family want to know about. Regardless of how bad someone else has it.
So if you feel sad that you're just now hearing about this - I'm sorry, I literally have kept it to myself and have only slowly been telling others about how bad it is since my complete breakdown two weeks ago to Mike. I'm not trying to keep people in the dark, I just don't want to burden you with my shit.
If you've felt like I was weird, distant, awkward, that I ignored you please don't take it personally, most likely I was just in pain or exhausted from not sleeping and honestly, I'm awkward AF when I'm not in pain. I don't mean to be, I just am.
Lots of people have asked what they can do, and honestly just send good vibes and prayers. Prayers that we can figure out what's going on and we can find a solution. Even 10 year later, pain management is not a road I want to travel down. And also please throw down some prayers for Mike and the kids and both sets of our parents. The reality is this summer will likely be a little bit more challenging that we originally anticipated and I may not be able to pull my weight all of the time, which means we'll be relying on some extra help from Grandmas and Grandpas. I know they love us and would do anything for us, but it doesn't make it any easier.
In the meantime, we'll keep moving forward with business as usual. I've got kids to love, a business to manage and a garden to plant. It may take me a little bit longer to do things, but I'm gosh darn determined to keep things as normal as possible.